A Beautiful Mitzvah

My beloved grandmother started every morning the same way, sitting in her favorite chair next to a large window watching a flurry of busy birds eagerly feeding from the bird feeders my grandfather had lovingly built for them. She always told me how fascinating nature was, the pecking order of life all represented on those bird feeders. The strongest birds commanding the prime feeding spots while the smaller, weaker birds frolicked nearby, patiently awaiting their turns at the feeders.

I used to think I was similar to those strong, resilient birds. After all, I came from a long line of resilient women.

All that changed, however, the morning our infant son, Hayden, passed away from a heart condition at just 39 days old.

On the last morning of his life, and in many ways, my life, I held him in a rocking chair blanketed in sunlight from a nearby window. It was a window I had spent countless hours staring out of, dreaming of the day we would take Hayden home and this nightmare would be over. That day never came.

On his final morning, I could feel him slipping away from me. I knew the time was coming to let him go, for him to gain his angel wings and just like those beautiful birds my grandmother so loved, fly away from us forever.

His heart was so weak and his tiny body bruised and broken from fighting so hard to stay with us. He no longer resembled the healthy baby boy who had graced our lives just five weeks before. The knowledge that the fight had been lost and the end was here was inconceivable.

There are no words to describe the way the world looks after the death of your child. With vacant eyes and beaten spirits, my husband and I left the hospital to be with our two other children who were patiently waiting for us at home with their grandparents, hoping against hope that their baby brother would be coming back home with us.

With Hayden’s struggle over, mine was only beginning. The journey to come back to my family, to be present for them, to fight my way out of the darkness that threatened to pull me under and never let go, was intense. The pain was unrelenting, searing and all-encompassing.

And then, ever so quietly, hope slowly began to take form in the broken corners of my heart. Somewhere in the midst of all the despair, the voices of our two other young children were able to reach me. In my oldest son’s eyes, I could see Hayden urging me to keep fighting. So I fought, not for myself but for them and for Hayden.

During our time at the hospital with Hayden, we crossed paths with so many people who changed our life in countless amazing ways.

One particular morning, we met a cantor who volunteers as a chaplain at the hospital. He quietly offered us the wisdom and ability to save ourselves after Hayden’s death. He ever so patiently listened to our cries and our pleas. How could God do this? Why us? Why Hayden?

He didn’t pretend to know the answers and didn’t attempt to explain the mysteries of the universe to us. What he said, though, would change us forever. We had unknowingly found ourselves at the crossroads of our lives. Would we lie down and let this terrible loss defeat us and our family? It would be so very easy to succumb to the anger, the grief and the despair and really, who would blame us?

Or we could fight. We could keep fighting for Hayden. Fight in his name for his legacy. He came into this world and forever changed everyone who met him. That didn’t disappear when he left us. We could change the world in his name, a beautiful mitzvah (good deed), as it is known in the Jewish faith.

So we did. We chose to keep fighting. We chose to honor our cherished son. We chose hope and light over despair and darkness. We founded Hayden’s Hope in September 2011, just a few short days after Hayden’s death. Our organization financially assists families with children awaiting a life-saving organ transplant. To date, we have raised over $170,000 for families going through the unimaginable. Our hope and mission is to be able to alleviate transplant families’ financial concerns so that they can focus solely on their child. It brings us tremendous comfort to know Hayden’s story has inspired so many to give in his name and has raised awareness for the great need for organ donation within the pediatric community. Hayden’s spirit is strong and lives on in the children we help through Hayden’s Hope.

I am proud to say that at the crossroads of my family’s life, we chose hope. We are deeply battle-scarred, but we are here. And that’s all we could have hoped for.

Jennifer Nowkhah is the mother of four beautiful children. She is a domestic adoption advocate and co-founder of Hayden’s Hope. Her youngest son, Hayden, passed away in September of 2011 while awaiting a heart transplant. He is the inspiration for Hayden’s Hope, a charity that supports children awaiting a life-saving organ transplant. She lives in Charlotte, North Carolina with her husband and children, Nicolas, Nahla and Leighton. Please visit www.haydenshope.org to learn more about Hayden’s Hope.

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The On Coming Alive Project is a movement of people rising from the ashes and coming alive. The project features a diverse group of stories on the topics of abuse, addiction, death, depression/anxiety, divorce, domestic violence, illness, rape, and suicide. On Coming Alive was created as a platform for those who have suffered to share their stories of survival and their wisdom with the world.